Stage 3C Triple Negative with Nodes

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Jojobird
Jojobird Member Posts: 203
edited February 2018 in Triple-Negative Breast Cancer

I am new to this community, but have been reading many of the comments. I truly appreciate the voices and support that are out there.

I was diagnosed in early April with TNBC, stage 3C. I had a full mastectomy with 21/21 nodes positive. Clear margins after surgery, but extra-nodal extensions were present. Will start chemo tomorrow, AC/T, total of about 6 months of cycles. The prognosis looks grim, and I don't see long-term survivors with my diagnosis out there on boards at all. It's been devastating. I have an 11 year old daughter, a husband I love, friends, a good job....just very, very hard. I cry a lot. Am wondering if there is any hope for us, for this diagnosis? Does anyone know long term survivors with a similar diagnosis? My onc won't even tell me about statistics, as she is kindly trying to keep things upbeat by telling me there's hope, and that the chemo/radiation will help to prevent recurrence.

Just trying to find anyone, anyone, who's had a similar diagnosis who's made it for the long haul. Thank you for being here.

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  • Joliel
    Joliel Member Posts: 9
    edited May 2016

    Dear Jojobird

    I am so sorry you are dealing with this diagnosis. I understand the devastation especially with an 11 year old daughter. My daughter was 11 when I was diagnosed. I just wanted to give you some hope, I was in a breast cancer support group and the woman leading the discussion group had been diagnosed 22 years ago with tnbc all nodes removed on the cancer side and all positive. She said it wasn't called tnbc then but that's what she had as it was receptor negative. She is alive and well and living her life! Please don't despair. You are on to this now and getting treatment. One foot in front of the other.

    Xx

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Dear Jojobird, sorry you have to be here... but wanted to say welcome! You'll find support and encouragement here, so please spend some time getting to know some of our other members. Same way the woman Joliel told you, you'll see there are many many stories of hope in our boards too!

    Please keep us posted on how everything is going, we're thinking of you!

    The Mods

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  • 4everStrong
    4everStrong Member Posts: 118
    edited May 2016

    Hi JoJo

    I am also stage 3 (all in my signature). there are a lot of stage 3 survivors out there.. dont dispair, it will do you no good- no need for more anxiety and stress to your system... , what I understood from this cancer is to stay positive throughout!! no need to think negatively.. take the treatment that is available to us.. do positive research to find out how we can help our case and improve on our prognosis.. also staying tuned to all new treatments or new studies!

    I have heard and read inspiring stories of long term survivors and it's all possible.. we will win this!!! that is the right attitude.

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  • Jojobird
    Jojobird Member Posts: 203
    edited May 2016

    Many, many thanks for the encouraging words. Had my first AC chemo treatment today, and I thank God for anti-nausea meds and kind oncology nurses. I look forward to hearing/reading/responding to more posts.

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  • JAN69
    JAN69 Member Posts: 947
    edited May 2016

    JoJo, I'm chiming in to welcome you to BCO and to tell you I'm 5+years from DX and doing just fine. I was stage III with 6/12 positive nodes. I'm much older than you and chemo and rads were brutal for me, but it worked! I, too, would worry about my 11 year old, and I wish you well for her sake as well as yours. Glad your first chemo went well. Please keep posting so we can offer support. Jan

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  • SCVA
    SCVA Member Posts: 11
    edited June 2016

    Hi JoJo


    I am stage 3C trip negative....I did chemo first then surgery then radiation....just finished phase 1 reconstruction-DIEP ....it's a very hard road but you will get thru it and you will be well...I was diagnosed when my son was 4 ...he is now 6 and finishing kindergarten in 3 weeks...you are still a mom during chemo and that is a great distraction....good luck...if you are on Facebook look up our closed group for stage III+ tnbc ...lots of us out there and doing well

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  • LJ2016
    LJ2016 Member Posts: 31
    edited June 2016

    Jojobird - I'm starting chemo on Wed and I'm TNBC IIIC too. I'm having chemo first, then surgery and radiation after. I'll be praying for you. It does seem so unfair, but we can fight through it and enjoy a long life after the fight. I agree we have to stay positive and focus and be grateful for all we have. It's a process that is moment by moment for me. I do feel better when I can be in the moment and not looking too far ahead. I certainly have my angry, anxious times, but i try not to stay that way for long

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  • Winters74
    Winters74 Member Posts: 25
    edited February 2017

    just curious how everyone is doing now?????

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  • Jojobird
    Jojobird Member Posts: 203
    edited March 2017

    Just wanted to update this thread.

    I will be one year out in three weeks,one year past diagnosis. After mx, chemo and rads, I am NED and running, cooking and planning an overseas trip with my daughter and husband.

    Support, help, asking questions and knowing limits have been essential. I am so grateful for the sisterhood of these boards and support groups out there. Of course no one knows what the future holds but I am grateful for today. New research is coming out all the time.

    There is hope. Gratitude out to this community and to the kindness of strangers.


    Jojobird


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  • VLH
    VLH Member Posts: 1,258
    edited March 2017

    That's wonderful, Jojobird!

    Lyn

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  • MsSherman
    MsSherman Member Posts: 7
    edited March 2017

    Hi!

    I'm finding it very hard sometimes these days, and today I feel so anxious. After my masectomy (Feb. 22) the pathology came back showing all 43 lymph nodes which were removed had cancer, and I went from slightly estrogen positive and HER2 positive (from initial biopsy Sept. 2016 ) to triple negative. I was quite discouraged by this recent news but my radiation oncologist gave me hope with the treatment plan,but now two spots haven't healed from the surgical incision and I see the wound care nurse every three days (he packed it with iodine tape and says it's ok....)With the aggressive nature of Inflammatory Breast cancer, I am so scared that the radiation might be postponed. I didn't have clear margins on top and there was one node next to the sternum from the pre-op breast MRI which looks cancerous so radiation and then Xeloda is the plan for managing what's left over.

    I see the radiation oncologist today, and I hope they can still move ahead w/prepping me for radiation.

    Good things in my life include wonderful loving people like my passionate spouse, friends, some family members, and very caring onocological surgeon, and radiation oncologist, and compassionate staff from the OICC (Ottawa Integrative Cancer Centre) including my acupuncturist, massage therapist, yoga therapist,and naturopath, and my physio therapist. I try to keep myself upbeat by singing at church and with the Army Voices (although I am a civilian), meeting and walking with my girlfriends who are from a BC support group, and yesterday I actually played badminton (to help regain my range of motion before radiation).

    Reading about everyone's journey often makes me feel less alone and gives me hope....just it's such older coaster.

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  • Dova
    Dova Member Posts: 16
    edited March 2017

    My mom just got DX with stage IIIC, she had 4xTC before surgery and it didn't seem to do much for her. After her mastectomy she will have Adriamycin and radiation.

    We are hoping and prying every day and trying to stay positive. Everything is possible

    I wish everyone well

    Cristina

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  • Sheliahm
    Sheliahm Member Posts: 32
    edited April 2017

    Hello everyone Hope all is well. I'm seriously losing hope. Diagnosed last year in Aug with tnbc stage 3c with lymph node involvement(15/26). I'm also brca positive. I've completed chemo double mastectomy and now I'm waiting to do rads. I had a follow up with my breast surgeon because I felt something on my breast. Really small she removed it in her office and sent it to pathology. Now I don't know how fast cancer spreads but I found two more suspicious spots on breast. Just so happen I had a follow up with my onc today and she felt something above my collar bone. As we are talking I get the results from my breast surgeon and it came back positive. I guess it's safe to assume the chemo didn't work as well as they thought. So more scans to see if it spread to organs or of its still local as she puts it. I'm tired. This is bad and I can't help but think of the worse case scenario.

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  • Hahlyn
    Hahlyn Member Posts: 179
    edited April 2017

    Hello Ladies

    I feel the same way. I like MsSherman had node involvement 14/28. Honestly when I was first diagnosed in Aug 2016 I thought with the treatment plan 6 rounds TCHP somehow I thought I would be okay. On my way to getting herceptin because I was her 2 positive and on my way to radiation and boom be done in September. But that was my plan. After lumpectomy and lymphnode removal my receptor status change from her 2 positive to triple negative I was devastated. My heart just broke then I was told I would have to do more chemo but a different one AC 4 times. I figured okay I can get thru it. MO said I should do way better than I did on TCHP. I had a port placed had my first treatment and felt so good..I was eating I just felt good. Then I week later I end up in the hospital with a staph infection they believe due to the port placement. I was hospitalized for 6 days when I was released i was stuck with a pump that gives me antibiotics every 4 hours...this has been going on since March 31. My anniversary is April 16 I had planned a quick trip to vegas but had to cancel.

    This infection really placed me in a bad head space. Severely depressed no energy barely any.appetite. Can't really think about the BC due to the infection...I am beyond sad I honestly thought by now I would have some hair my nails not as discolored i.just thought I would feel a lititle like me. Well I guess I did for a few days but this is horrible. Like I said my heart is broke. I have a husband 2 kids 16 and 13 and just finding it hard to be positive,

    Sorry for the long post.

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  • LynnieRich
    LynnieRich Member Posts: 28
    edited April 2017

    I am so sorry sheliahm and hahlyn. I wish I had something encouraging to say to help. I did just want to say I'm listening and you have my thoughts and prayers with you. So far in my journey I've learned that things def don't go as we planned. But I think it gets better! And we in BCO are here for you as you go through it.



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  • cndavis651
    cndavis651 Member Posts: 3
    edited May 2017

    Looks like I am in a similar boat as some if you. How are you ladies doing, btw?

    I was diagnosed in October 2016 with stage 2b IDC, grade 3, one known node involved, ER+ (30%, which is low). Jumped on board the neoadjuvant chemo train right away... 4 rounds of DD A.C., then weekly Taxol and Carboplatin for 12 weeks... was told this was the most aggressive treatment. Started with breast swelling and tenderness, then redness with 4 weeks of chemo left. By the time I had my bilateral mastectomy and axial lymph node removal ON April 13th, the tumor had doubled in side (9.5cm), I had 10/24 axial nodes involved, I had some skin involvement (although technically not inflammatory BC, so I was told), and posterior chest wall involvement. NEW staging was Stage 3c. Hormone receptor retesting showed that I'm now TN. Supposedly, margins were clear. I was excited about starting rads to finish off the major treatments. Then I got the news that one of the nodes that showed up on my pre-surgical PET scan was superclavicular and was still in there. A closer look at a CT showed one node with "gross disease" and three more that looked suspicious. The plan was to move forward with radiation with Xeloda, but right before I started I grew a lump near my mastectomy scar. Biopsy says it is cancerous. I've found 4 more since I started rads. Now, 5 days into rads + X, I have serious swelling in the collar bone region, and the rad onc doesn't know if it's from the cancer growing or dying (or lymphedema?). My med onc just ordered a brain MRI to check for brain mets. I sought a second opinion from a specialist, and she didn't have any better ideas for treatment.

    I am beyond FREAKED out. I made sure I always chose the most aggressive treatments, and so far nothing has worked. Since surgery, I haven't gone more than 3 consecutive days without some new bad news. I'm feeling very doom and gloom. I have two girls, 2.5 years and 14 months, and I can't keep it together when I think about leaving them so young. I cry a lot too.

    I'm not really sure I have many good options left for treatment after rads. I'm really hoping it works. Sheliahm, did you start radiation? If so, has your recurrence responded? I'm looking for a ray of hope.

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  • Sheliahm
    Sheliahm Member Posts: 32
    edited May 2017

    Hello cndavis651. First let me say I'm sorry you are going through all this. Im halfway through radiation and it seems some of the nodules are responding. But the superclavicar nodes I can still feel. Doc did say they reduced in size. Im also doing low dose cisplatin once a week as well. But to be honest I'm still scared. Im having all kinds of aches and pains not knowing if it's the chemo, rads or the cancer spreading. There are days i Just want to give up but I think about my kids and decide to fight. it's exhausting just thinking about we got to fight this. Please cndavis651 don't give up hope.

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  • TraceyLou
    TraceyLou Member Posts: 16
    edited February 2018

    Hi Ladies - I realize these posts are from 2017. I am new to the group and wanted to drop a note. I hope you all are having great successes with your treatments since May of 2017. my tumor also grew while on ACT. it had shrunk significantly with the AC but once I went on Taxol, it did not work and nearly doubled in size. After the mastectomy, it showed 4 nodes involved and two smaller tumors in the same breast. I also learned that the larger mass had 5% ER+ which is bizarre. The MO started me on Tamoxifen b/c i can take that during radiation. This whole thing is an awful roller coaster ride that you cannot seem to get a handle on. I am meant to start radiation in a week but terrified something may have started brewing even since my last PET, which was January 26th (surgery was Feb 5th). i'm praying it hasn't. Like you all, I have children and can't imagine leaving them so refusing to give up. this weekend has been hard where I find myself crying a lot but I've given myself until end of today then my warrior comes back into the game :)

    Hugs to you all..hope to hear from you...

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  • Jojobird
    Jojobird Member Posts: 203
    edited February 2018

    Hello, Tracey, and everyone else,

    I have not checked this board for some time and can totally relate to what others are posting.

    Tracey, I can so relate to the roller coaster ride. My two year anniversary (since diagnosis) is next month, and I can't believe it. I honestly didn't think I would make it. After the mastectomy, chemo, and rads wiped me out, we had some major family drama and I didn't think I could go on. The roller coaster ride is surely a part of it -- and it's the not-knowing, the uncertainty of tomorrow, that is so hard to bear.

    I also struggle with every ache and pain, though as the months go on it gets less scary. I am gradually learning the new rhythms and post-treatment quirks of my body.

    You are not alone. One day at a time. If it's any consolation, there is feverish new research going on into TNBC these days, and clinical trials are out there.

    Hugs to all.

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  • TraceyLou
    TraceyLou Member Posts: 16
    edited February 2018

    thank you JoJo - i'm so glad to hear you are coming up on your 2nd year anniversary and that you are living your life. it gives me such joy. I am going to focus on what I do know and bury myself in work to distract myself. I love my job so that makes it easy to do :)


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